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Archiver > GENEALOGY-DNA > 2006-04 > 1144432546


From: "Diana Gale Matthiesen" <>
Subject: RE: [DNA] novice SMGF question
Date: Fri, 7 Apr 2006 13:55:46 -0400
In-Reply-To: <307.2242b7e.3167f567@aol.com>


Ann,

No, I did not read your message of 4/6. I do not read all the posts on
GENEALOGY-DNA. This is a busy list and I don't have time to read every post. I
only read the threads that interest me at any given time. I hope I'm not
required to have read the entire Archive before I speak up for fear of
mentioning something already discussed. It's a coincidence that I had my
problem in the wee hours of 4/7. Maybe if I'd had it a day earlier, I would
have picked up on your post.

It is illogical to say you will protect someone's test results, then put them on
the web. They have only made the results tedious to retrieve, not impossible.
The only people they are impeding is researchers. If they promised their test
subjects not to put their data on the web, they have failed to live up to that
promise because the data ARE on the web and ARE retrievable.

As for "data mining," who cares? So what if someone extracts all the data, what
are they going to do with it, sell it? (Hint, you can't sell something that
someone else is giving away.) Has somone extracted all the data from Ysearch
and made a bundle with it? No? Well, no surprise because there's no profit in
it. There's no incentive to extract all the data, so there's no need to guard
against it. The only good these data are are for research, research that we are
all doing for free, so there's no market for that, either.

I can't see making excuses for them or trying to rationalize how they set this
thing up. IN MY OPINION it was set up badly.

Diana


> -----Original Message-----
> From: [mailto:]
> Sent: Friday, April 07, 2006 12:04 PM
> To:
> Subject: Re: [DNA] novice SMGF question
>
> Diana, I gather you had not read my message of 4/6, in which
> I briefly
> discussed both the optimal search strategy and the
> constraints that SMGF operates
> under. I'll expand on the latter a bit more here.
>
> SMGF is a research project, focusing on autosomal markers.
> This merits an
> extra layer of protection and privacy, and SMGF follows
> guidelines set forth by
> the Western Institutional Review Board for human subjects.
> The motivation for
> this is to reassure participants that SMGF is operating in a
> respectable
> manner. They even had to get approval from the WIRB for the
> current discount coupon,
> offered to people who volunteer to participate in the
> project. This seems
> overly legalistic to me, but I suppose the rationale is that
> monetary inducements
> might persuade people to participate against their own best
> interests. That's
> the same reasoning applied to egg donors, BTW.
>
> I've been a research subject in many different types of
> studies at Stanford,
> and I'm always amazed at the consent forms. Sometimes I get
> personal results
> (four eggs a day did not raise my cholesterol, and I
> responded to a 1/10
> dilution of smallpox vaccine) and sometimes I don't (they
> won't tell me if my sense
> of smell or my memory is normal for my age!). I participate
> because I'm
> interested in furthering the research goals.
>
> The searchable Y-chromosome database was originally
> constrained to searching
> for close matches to your personal results, obtained from
> another outside
> source. This was similar to FTDNA's policy -- you can only
> see results for people
> who match you closely (and give their consent, of course).
>
> SMGF is perfectly aware that some people are interested in
> "data mining," not
> just looking for a personal match, and they do try to balance the two
> objectives, always keeping in mind their original promise of
> privacy. It was only
> last summer that SMGF was able to add searching by surname.
> The constraints are a
> matter of approval from the WIRB, not programming skills.
>
> You mentioned that people could upload their own results from SMGF to
> YSearch. I think that's a fine idea (in fact, I've done so),
> and it would provide
> contact information, too. Of course, Ysearch doesn't have the
> quality control
> that the internal FTDNA or SMGF databases have, but it still
> serves a useful
> purpose.
>
> Ann Turner
>


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